"Suffering the Slings and Arrows of Outrageous Fortune"

Since February 9th, Em has had 75 episodes that are seizure-like. Sometimes she has several a day. Sometimes she goes a few days between episodes.

They look like a seizure but certainly not exactly. Now, it is possible that some of these episodes could be a type of seizure and the upcoming EEG monitoring should help us figure that out. But, I got a suggestion that tipped me off to what I think is a more likely possibility and I am very VERY grateful to Paulette for suggesting it because I suspect it would have been a very long time before the doctors would have figured it out.

Complex Migraine (or Migraine with Aura) is what I am now convinced this is. Apparently, the aura of a migraine can look very much like a seizure or even a stroke. I think we didn’t notice the headache that typically follows the episodes because, let’s be honest, she pretty much always has a headache. Even when she complained that her headache was horrible afterwards – well, not only does she always have a headache, but headaches often follow a seizure, so it seemed to make sense. But, after doing some research, it makes more sense that this is a Migraine with Aura. Furthermore, I am wondering if she is specifically having basilar-type migraines, which would fall under the umbrella of Complex Migraine.

Initially, I was convinced the episodes were triggered by cervical instability – the first episode was in the car while she was wearing her hard collar because her neck was so unstable. She complained of her vision being “weird”, then was unable to move or talk and was in and out of consciousness – I thought she had just fallen asleep. She was barely able to walk once we got home 30 minutes later, then the symptoms resolved completely and she was fine. (Well, not fine, but the point is the symptoms wholly resolved until the next episode.) By the 4th episode, my records show her describing feeling like her head was “sitting on a burning spike”. Another time, she described the pain like her head was “expanding like a balloon when she breathes”. Looking back, she says she almost always had a worse headache after these episodes.

The length of a migraine aura is 5 to 60 minutes, while seizures typically last 2 or 3 minutes. Her episodes tend to last between 5 and 30 minutes – the longest being far too long for a seizure but right in the range of a complex migraine. In the early episodes, she tended to go limp for several minutes. Eventually, the episodes started looking more like a tonic clonic seizure – but not quite as violent. Just a lot of twitching and jerking and twisting stiffly and then going limp, often repeatedly. She often has trouble speaking, swallowing, and breathing during the episodes. Sometimes her eyes are closed, sometimes her eyes are open and dart back and forth the whole time. She sometimes has a black horizontal line through her visual field that eventually fades. She often can’t move her legs for several minutes after. Often, she is aware during, but goes in and out of consciousness. She is dazed, confused, and dizzy for 5 to 15 minutes after.

The headache part is hard because she has such layers of headaches. She has been dealing with high pressure headaches, then low pressure after the LP, then bouncing back and forth. So it has been hard to sift through all of that. But, she has been having what we now believe are legit migraines and they mostly follow these episodes, although she has had a few without the aura. They don’t respond to Diamox, she is very sensitive to light and sound, she is nauseated and the headache eventually passes a few hours later. She sometimes has multiple episodes in a day that result in the headache never going away and just getting worse with each episode. The headache is bilateral and originates at the base of her skull and wraps around to her temples. (These points are what makes me suspect a basilar-type migraine. If I am right, then my initial suspicion of brain stem involvement wasn’t entirely wrong.)

I have been keeping detailed records of the episodes but it finally occurred to me to keep track of her headache pain before and after the episodes. Typically, her headache is a 2 or 3 before and a 6 or 7 immediately after, increasing to an 8 or 9 within a few minutes.

These episodes are now mostly triggered by flashing lights: police lights, strobe lights, sunlight flickering through trees while driving, etc. There is one stretch of road on our way to Speech Therapy that is all woods – if it is a sunny day, she is almost guaranteed an episode. Watching TV shows with flashing lights on NetFlix often ends up triggering an episode. One episode was started by police lights that went by our house. (I never, ever realized how many flashing lights are in this world until now. It is ridiculous!) Fluorescent lighting is problematic, although I don’t think she has ever had an episode specifically triggered by it. She can sometimes avoid an episode by avoiding flashing lights: when driving or watching TV, she can avert or close her eyes and not go there. Not fool proof, but she does have some control. Sleep deprivation also seems to trigger them and sometimes they just happen with no obvious trigger.

The concussion from December probably has a lot to do with these episodes, in my opinion. I think the EEG monitoring will help us figure out any actual seizure involvement, hopefully. I do know that it is possible that the episodes that are more seizure-like and not quite fitting into the Complex Migraine symptoms might not be triggered during the monitoring or that epileptic activity might be harder to catch, so we may not have a conclusion on all of this. The important thing is that we get expert eyes on her. Epilepsy experts and hopefully migraine experts who really know the complexity that can exist and don’t try to slap a psychogenic label on her.

And, yes, there is a bit of irony here. Early in this journey, we were sent to a Headache expert who idiotically insisted Em was having migraines. We *knew* she wasn’t. We suspected high ICP and just wanted to try Diamox. Eventually we found a doctor who did prescribe Diamox and it made all the difference. So, for all these years, I have battled constantly to keep the right focus on her headaches.

But the situation has changed. I believe that damn concussion has radically changed the landscape and now we are dealing with a whole slate of new issues. So, if this is migraines, so be it and let’s address it. For that matter, if it is seizures, so be it and let’s address it.

I am hopeful that if we get the right people looking at this, we can figure it out and get her some relief. THAT is the important issue.

Finally, I just want to say how much I appreciate everyone who reads, comments and shares. Not only is it crucial for all of us to know that we are not alone on our journeys, but we all have knowledge that can help someone else who is struggling. My hope has always been that sharing our experiences here would help someone else but we have been so blessed by hearing about other’s experiences as well. We would be lost without you, truly. 🙂

Comments on: "Seizures or Complex Migraine?" (8)

My 16 year old daughter was diagnosed with EDS 4 years ago. She has migraines that present with loss of vision, numbness and inability to use her right arm, facial drooping, and aphasia. If you didn’t know her history you would think she was having a stroke. It is very scary and the most recent one seemed to be worse and last longer. We are having trouble finding a doctor who can tie all of this together. Thank you for sharing. It gives me hope knowing there are other people out there with this issue.

It is so scary. From the beginning I thought there were some signs that looked stroke like or at least like a TIA. I am so glad to have this community of people who shares their experiences. The worst possible thing is feeling alone when you are on this journey. We don’t have a doctor yet who will be looking into this yet, but I am hopeful we will get to one soon! I hope your daughter finds someone to help her!

I have a 15 year old daughter who has EDS Hypermobility type and autonomic dysfunction. She also has a history of several different types of migraine. The neurologist we saw suggested we go see a “controversial” eye specialist who she thought may be worth a try, since nothing else was working.

So, of course, we went, because we are willing to try anything to help her live a more normal life (you can so relate) and because the migraines were happening 6 days per week. She was truly miserable. Now, a pair of glasses with special prisms have decreased the migraines to about one a month. They chalk up all the symptoms to binocular dysfunction, where the eyes are not working together properly, and causing all sorts of problems. They also say this can develop post-concussion.

They are Vision Specialists of Michigan. Their website contains a ton of information, and a questionnaire that can help predict if this may be the cause. I thought, like us, you may be willing to look into any option, no matter how far-fetched it may sound. vision-specialists.com is their website.

I hope this is helpful, and that your daughter finds relief soon. I feel for her, and for you, as I know first-hand how awful this all is.

Basilar migraine was one of the diagnoses my doctor thought of, and we tried treatment for, before I was eventually correctly diagnosed with dysautonomia. I had seizures too (originally misdiagnosed as epilepsy), but it turns out they were from lack of oxygen to the brain (thanks to the dysautonomia).

We tried several treatments for the Basilar migraine, none of which worked fantastically for me (which we now know was because I didn’t actually *have* basilar migraines). But if you like, I could dig through my old records and find out what meds we tried.

I am just hoping we can find *someone* who can help us figure it out. The more I read, the more I am convinced she is dealing with migraines. But, POTS is ever present. The weird thing is, she has now started fainting in addition to these episodes. She has never been a fainter – she has always been able to stop it before it got to that point. But now she faints when she has a spike of pain, she fainted after the MRI contrast, she faints when she changes position too quickly. They are very different than the “seizures” – she collapses like a rag doll and after a few seconds wakes up and is almost instantly fine.

So, who knows. I am just hoping so hard that all of this testing leads to answers! If you feel like figuring out what meds you tried for basilar migraines, that would be great but don’t knock yourself out. Who knows how long it will be before we even get to someone who will try to diagnose it!

Welcome!

Thanks for visiting my blog where I chronicle 'Our Life with Ehlers Danlos Syndrome'. I am sharing my family's journey with EDS (and everything that goes along with it) in the hope that our experiences will help someone else.

Go to Our Story to read about the early days of our EDS journey. Or click here to go to the first post of this blog, if you would like to start at the beginning.

Take a look around - I hope you learn something that is helpful in your own journey! While you are here, I would love it if you left a comment telling me about yourself. Feel free to contact me if you have any suggestions about what you would like to see on this blog!

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